Need to get my head around this!

Discussion in 'ARCHIVE FORUM: Support discussions' started by connie, Feb 8, 2007.

  1. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Lionel is doing quite well physically.........but not too sure of his mental progress.

    I have posted before about his " two Connies".

    Yesterday during my visit he had an 'accident'. Pressed his buzzer, but he had already started to wet himself. Carer came in, and said she would call for someone to help her. Of course I volunteered...............We stripped Lionel, washed him, and then gave hime clean clothes and made him comfortable.

    He sat, holding my hand......."do you get paid very much for your job" I realised he was confusing me with the regular carers.

    Thought I had placated him.................."When you are finished today, would you like to come back, and then maybe we could go out for a couple of hours".

    So he had forgotten me (albeit for the time being), but still fancied me enough to ask me out on a date. (This from a man in a wheelchair)

    Do I laugh or cry? I am opting to laugh, he would see the 'humour' in this, if only things were normal.
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Connie,
    Isn't that fantastic - despite his mental confusion, Lionel 's heart still knows that you are special.
    I once mentioned before the analogy that I had heard of dementia being like a brilliant violinist playing an out of tune violin - Lionel is still playing all the right notes, you just have to listen more carefully now to hear the correct tune.

    Connie, try and not let the 'knowing' become an issue in your head - Lionel is your man, your soul mate, and you know and love him. Keep laughing, keep smiling - cos if not, the dementia wins!

    Love Helen.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Dear Connie,

    It hurts to think you might have been forgotten doesn`t it. My husband often forgets who I am, and that we`ve been married nearly 44 years. He has told me he has a wife in Manchester and another family. He has asked me if I have a family. He has asked me if I have any children. He has knocked on the door of a room I may be in and apologised for disturbing me, as if I were a total stranger. He has offered me rent.

    But this evening, he started to discuss my forthcoming birthday, when I`ll be 65. He wants to take me for a candlelit dinner. So Connie, Just like Lionel still sees you as someone special, so does my husband see me.

    We`ll just have to make the most of what we get, won`t we.

    Love Sylvia xx
     
  4. Michael E

    Michael E Registered User

    Apr 14, 2005
    619
    Male
    Ronda Spain
    After being the 'gardener' for ages I am suddenly Monique's husband again and we are married. Have conversations - well brief statements about it which frequently end up with her asking me if I know where Michael is?

    Clearly like another famous lady she prefers the Gardener to her husband...
     
  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Quite often David doesn't know who I am although he says you are 'familiar'! It always ends up with a hug and him saying how grateful and special I am for caring for him! I know he still cares, probably now more than ever - he understands he 'needs' me now more than ever! At the end of this I am going to miss being needed.

    Yes, Connie, it hurts so much but I think I have given up trying to get my head around it. You have to laugh! (although a cry is accepted too).

    Last week David came into the kitchen and said to this woman (me) - are Jan and I separated? So I said who do you think I am? - I dont know was the reply. So I told him I was Jan and no we were not separated. I emphasised we would never be separated unless he wanted to run off with a younger woman (he can hardly walk). We just laughed and hugged (but my heart was crying).

    Best wishes Jan
     
  6. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    My mum often calls my brother by my father's name. She also asks about my (late) father from time to time and one day she wanted to know what happened about him. " Did I marry him?" she even asked and I reassured her that not only had she married him but that she had had a very happy marriage. She does recall her marriage warmly herself from time to time. I think Lionel knows, underneath that he is married to that wonderful Connie, but the pieces of the jigsaw aren't quite fitting properly at the moment. They may swim back into place. It can happen. I like to think that even when my mum is very confused, she does benefit from the company of loved ones. I'm sure that your company, Connie, is really priceless for Lionel even if, for the moment, he is a little confused. Perhaps he is falling in love with you again. That wouldn't be at all surprising, given all your devotion.
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    John knows who I am, but I don't think he remembers my name. That doesn't matter.

    He wants to be with me 24/7, doesn't like visitors, even his sons, and when we visit them he can't wait to come home. And yet he was fine in the hotel, because he had my undivided attention.

    But I don't get anything 'special' from him, no romance. I don't want gratitude, but it would be nice to feel that he regarded me as more than his primary carer. Birthdays, Christmas, anniversaries are meaningless to him, because of his language difficulties.

    I love him so much, and it would be so great if he would just give me a hug.
     
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Oh Skye - your post is so so sad. I dont think David gives me hugs , its more that I give him them. I understand a little of what you say because there is no romance - although David does get worked up if he thinks he has forgotten a present for me (I usually buy them for myself and tell him what he is giving me!!! - if that makes sense). I suppose I am lucky in that David is still able to talk - even though it is repetitive and very mundane.

    I cannot do Connie's hugs but hope you can feel it from here.
    Take care (glad the hotel was ok - did you enjoy the break?) Jan
     
  9. Lucille

    Lucille Registered User

    Sep 10, 2005
    542

    Oh Hazel! That is so poignant. I don't know what to say! Except to send you my best wishes - the pair of you.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Dear Hazel, I`m the hugger now. If I didn`t, we`d be miles apart, especially on `bad` days.

    On good days, I do get warmth, but mainly in the way of how much he needs me, how he couldn`t live by himself, and thanks, for looking after him. It`s all very self centred now, how much he needs me, to do things for him.

    That is why I was so surprised last night when he began to discuss my birthday and what we`d do. He said he`d like to take me for a candlelit dinner to celebrate. I couldn`t believe my ears. Something to hold on to, even if it has already been forgotten.

    So sorry Hazel. When the language goes, communication must be so difficult. But the fact that he considers everyone except you, an intruder, speaks for itself.

    I felt comforted by your post because my husband too, regards our son and grandchildren as intrusive, and he too was fine on holiday, because he had me to himself.

    Surely here is another symptom of this curse.

    I do hope you haven`t had too much of a reality check following your holiday.

    Love Sylvia x
     
  11. mocha

    mocha Registered User

    Feb 17, 2006
    176
    Lancs, England
    Hugs needed

    It is Ron and my 48th Wedding Anniversary on Valentine's Day and it will be the first since he went into the Nursing Home.
    I am going to have my tea with him and will take a cake for all to share. I know he will be oblivious but's what's new, he never did remember the date.
    I know I will hug him and if I ask he will hopefully hug me back. It makes me cry just to think about it. Who would have thought that all our dreams of retirement would come to this. Never mind-we still have each other and our family and I will make it as happy as I can.
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Sylvia. Yes, definitely a reality check. John has been really stroppy today, and that's not like him. I'm hoping it's just because he's tired.

    Just had a phone call from his son & dil in Paisley saying they're coming down tomorrow. John is less than enthusiastic! I'm afraid it'll be hard going, but I'm glad they stay in touch -- more than my son does.

    Sorry, I'll feel better tomorrow. Thanks to all for the messages.

    Love,
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Maybe it`s something in the air

    There seem to be a lot of bad days today.

    My husband woke well, went for the papers, came home , said he was tired and has been `out of it `for the whole day.

    He`s been opening and closing cupboards and drawers, looking for things. I can`t help him because he doesn`t know what he`s looking for.

    Then he was questioning me about HIS money. This after 44 years of joint finances. Why doesn`t he see any of it? Who takes it out of the bank? What is it spent on? Which bank is it? He will go tomorrow and ask them. He has to save money to go home.

    Then he slept.

    I looked in his wallet. He has £80. Where he got it, I don`t know. He hasn`t been out, except for the papers.

    Then he woke. Again talk about money. I asked him how much he needed. he said he needs a lot, he has to buy a house, he can`t live here. He`s suffocating.
    I asked how much he has. he got his wallet, he had £40. Where was the rest? I have searched high and low, I wasn`t dreaming, he definitely had £80 when I looked and he hasn`t been out of the house.

    This has gone on all day.

    After dinner, he said he wanted to be quiet. I left him alone and went into another room. He must have slept, because he`s just come to ask for food. He is very unsteady and doesn`t know where he is. He doesn`t want me to sit with him. He has to think but he can`t because his brain is not working.

    His face is blank and his eyes are expressionless. I`m going to encourage him to go to bed.

    He`s just come to me again.
    `Where`s my pension? I should have 3 months pension.`
    `It`s in the bank`, I replied.
    `I`ll go tomorrow,` he said.

    Tomorrow is another day. I hope it`ll be a better day.

    Sylvia
     
  14. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Sorry you are having a bad day Sylvia, I hope that you can get your husband to settle down for the night - I remember how it used to be with mum. Hope tomorrow is better.
    Love Helen
     
  15. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Sylvia

    What a rotten day you've had, and I was moaning about a 'strop'. Let's hope tomorrow is better.

    Love and huge hugs,
     
  16. Áine

    Áine Registered User


    oh {{{{{mocha}}}}} big hug
     
  17. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    So true, so accurate - both rewarding and heartbreaking!

    I, too, am used to polite questions like "and who are you?" / "what's your name again, I am afraid I've forgotten ..." / "and where do you live?".
    I am delighted that he is trying to communicate, I am chuffed when he is so polite, but it doesn't stop me feeling sad and tearful to think that that's all that's left ........

    At least I can still hug him, and often I get a hug back. How I will miss all that 'at the end of it' :(
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I daren't think of 'the end of it'. There are so many little 'endings', and each one is so hard to bear.l
     
  19. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    My dear friends, cannot thank you all enough for sharing this aspect of your lives on this thread.

    Somehow it helps to know that it would seem to be quite a common occurance in this journey.

    No apologies, just think we need a hug.
     

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  20. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    dear connie

    sending love and kisses
    bel xx
     

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